In order to discover an effective treatment for dementia it is necessary to include dementia patients in clinical research trials. Dementia patients face an increased risk to lose the capacity to consent to research participation, and research possibilities with incompetent participants are legally strictly limited. One solution is for patients to consent to research through an advance research directive whilst still competent. In order to explore whether such a directive would be useful and valuable in practice we conducted a qualitative (...) study. We explored the opinions and arguments of researchers in the field of dementia, aiming to map the possibilities and constraints of ARDs. It was argued that a positive ARD could be valuable to discuss research participation with proxies, and patients with a negative ARD will be excluded from research trials. However, it is argued that an ARD cannot replace the informed consent procedure, and in practice proxy dissent will overrule written consent. The practical use of these directives is thus limited, as most researchers will not comply with positive directives. (shrink)

Background: Enhancing client autonomy requires close coordination of interactional practices between nurse and client, which can cause challenges when interaction takes place in video-mediated settings. While video-mediated services have become more common, it remains unclear how they shape client autonomy in telehomecare. Research aim: To analyse how video mediation shapes client autonomy when nurses guide medicine taking remotely through video-mediated home care. Research design: This is a conversation analytic case study using video recordings of telehomecare encounters. The theoretical approach draws (...) on ethnomethodology and empirical ethics. Participants and research context: Four home-dwelling older adults and three nurses participated in the data collection; data extracts include one client and two nurses. The study was conducted in Finland. Ethical considerations: Special attention was given to protect the rights of home care clients. An ethical statement for the study was given by the Ethics Committee of the Tampere Region Findings: Video mediation complicates interacting remotely with care-relevant artefacts because of nurses’ limited visual access to the medicine and client’s need to simultaneously engage in vocal interaction and medicine taking. This can be overcome by dividing the guidance into manageable steps which invite the client to explicate their readiness to take the medicine and situating the video-mediation equipment and medicine close together. Different interactional practices and ways of situating video-mediation equipment and medicine have consequences for client autonomy. Discussion: Understanding client autonomy in digitalised settings demands empirical examination that recognises the importance of different human and non-human aspects of care that shape client autonomy. Conclusions: To harness the benefits of video-mediated home care, communication technologies’ reliance on home space and interactional practices should be recognised. Empirical ethics research is needed in order to make normative suggestions that fit a wide variety of care situation. (shrink)